Resource Library

Welcome to our Library, your go-to resource for books on Atypical Parkinsonism. Our list includes medical guides, personal memoirs, and practical advice to help patients, caregivers, and families navigate the complexities of PSP, MSA, CBD. Find the information, support, and inspiration you need to better understand and manage these challenging conditions.

 Books Available on Amazon

Living with Progressive Supranuclear Palsy: A Guide to Symptom Management

Whether you are a person with PSP, a caregiver, or a healthcare professional, "Living with Progressive Supranuclear Palsy: A Guide to Symptom Management" by Laura Louizos is designed to provide the knowledge and resources needed to manage PSP symptoms effectively and improve the quality of life. This comprehensive guide provides valuable insights, practical advice, and emotional support to help navigate the challenges posed by this rare neurological disorder.

Handout Book for New Caregivers: Understanding and Caring for Someone with PSP Paperback

Great to Hand Out to Caregivers of Your Loved One:

This guide is an excellent resource to distribute to those who assist in the care of your loved one. By sharing this handout with family members, friends, or professional caregivers, you can ensure that everyone involved has a understanding of PSP and the best practices for providing care. It helps create a unified and informed caregiving team, enhancing the overall quality of life for your loved one.

Mindfulness and Progressive Supranuclear Palsy: Techniques for Coping: A Practical Guide for Patients and Caregivers Paperback

 

Authored with empathy and expertise, "Mindfulness and Progressive Supranuclear Palsy: Techniques for Coping" is a valuable resource for anyone affected by PSP. Whether you are a patient seeking to improve your well-being or a caregiver looking for ways to support yourself and your loved one, this book provides the tools and inspiration you need to navigate the journey with grace and resilience.
Whether you are a patient, caregiver, healthcare provider, or advocate, this book is a vital tool for understanding and managing PSP and Neurodegenerative diseases. "Navigating Progressive Supranuclear Palsy (PSP)" combines expert knowledge with compassionate advice, providing a beacon of hope and support for those affected by this challenging condition.

A Legacy of Hope: The Journey to Cure PSP and Transform Lives Paperback

Fiction


This book, “A Legacy of Hope: The Journey to Cure PSP and Transform Lives” is a work of fiction inspired by real-life experiences and the incredible strength of those affected by neurodegenerative diseases. While the characters and events in this story are fictional, they are based on the profound challenges and triumphs faced by countless families around the world.

The PSP Chronicles Paperback

 

Tim has been blogging his PSP journey, sharing his personal experiences with this disease as well as FTD - frontotemporal dementia. His readership spans the globe. Through his efforts, it is Tim's hope to give voice to those suffering from PSP and similar diseases that no longer have a voice of their own. Advocating for those affected... patients, spouses, families and friends. Always, with the goal of raising awareness, understanding and support to further research into prime of life brain diseases. He has made his story universal, yet personal and relatable.

The PSP Chronicles Volume II: Keep On, Keeping On Paperback

 

The author invites readers to follow him on his personal journey with dementia and a rare, terminal brain disease - Progressive Supranuclear Palsy or PSP. No treatment, and no cure. Experience the real life struggles, the joys, the sorrows and his unshakable faith. It is the story of a life — well lived despite the limitations imposed by PSP. It’s a ray of hope where not much hope can be found.

The PSP Chronicles Volume III: Putting Purpose To PSP Kindle Edition


The author invites readers to follow him along on his personal journey with dementia and a rare, terminal brain disease - Progressive Supranuclear Palsy or PSP. No treatment, and no cure. Experience the real life struggles, the joys, the sorrows and his unshakable faith. It is the story of a life — well lived despite the limitations imposed by PSP. It’s a ray of hope where not much hope can be found.

Beyond... The PSP Chronicles Paperback


This book - Beyond... The PSP Chronicles, like the first three volumes, is the author's platform to increase awareness of neurodegenerative conditions and to encourage their further research. The author distributes all proceeds from book sales to various PSP-CBD non-profit organizations. By utilizing with partnering alliances, he aims to hasten this research toward finding effective treatments and, ultimately, a cure for these insidious diseases.

Progressive Supranuclear Palsy Resource Journal for Patients, Caregivers and Doctors, Start Anytime 365 Day Journal Included Paperback


Use this journal to keep track of daily tasks, medical information and much more. The PSP resource journal provides an all in one record book to help keep you organized and informed of the daily journey with PSP. This information can help aide with diagnosis, treatment and care.

Progressive Supranuclear Palsy Daily Medication Tracking Journal Paperback

 

Use this journal to keep track of daily administration of medications and much more.
The 365 daily medication tracking pages provides an all in one record book to help keep you organized and informed of the daily administered medications.
This journal allows you to track and monitor vital information for a full year, it can be invaluable to the care and treatment of yourself or loved one.

A Son’s Journey from Parkinson’s Disease Caregiver to Advocate


This book is a memoir of and praise for his mother, Sharon, who was his best friend through both their lives and explores her journey with PD. The book is a heartfelt recollection of the beginnings of her Parkinson’s disease symptoms and his caregiving to support through her battle with PD.

Hummingbird: Poetry on PSP & Parkinson's


Parkinson’s disease is one of the fastest growing neurological degenerative diseases in the world. PSP, or progressive supranuclear palsy, is a rare neurodegenerative disease that few have ever heard of or understand and is often initially misdiagnosed as Parkinson’s. With her husband’s PSP diagnosis and as his care partner, the author chose poetry as a way to process how PSP and Parkinson’s impact lives. Her informational prose and heartfelt poetry are meant to spread awareness of this little known disease, give voice to those who suffer the challenges and heartaches of PSP and Parkinson’s, and to offer comfort to their caregivers so they know they are not alone.

Last Dance at the Savoy: Life, Love and Caregiving for Someone with Progressive Supranuclear Palsy

 

Last Dance at the Savoy is both a personal story about Scott's husband, Geoff Miller, the founding editor of Los Angeles magazine, who lived life fully despite having a terminal illness, and a sharing of her insights on dealing with the day-to-day issues of caring for someone with a progressive neurological condition. Scott "often yearned for someone to figuratively take my hand and walk with me through the difficult times; I hope through this book I can reach out to you with encouragement and practical advice."

Contains a foreword by Yvette Bordelon, MD, PhD, a neurologist at UCLA whose clinical work involves the diagnosis and treatment of movement disorders.

#Affiliate

 

About Us: 

The Coleen Cunningham Foundation serves individuals and families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Corticobasal Degeneration (CBD).

Mission

The Coleen Cunningham Foundation (CCF) is dedicated to honoring the legacy of Coleen Cunningham by providing comprehensive support to individuals and families affected by Atypical Parkinsonism. Our mission is to improve the quality of life for those impacted by these rare neurological disorders through compassionate care, advocacy, and education. We strive to foster a supportive community, offer respite and hospice care, and advance the understanding and management of Atypical Parkinsonism.

Objectives

1. Provide Compassionate Respite and Hospice Care

  • Respite Vacations: Offer families affected by Atypical Parkinsonism the opportunity to create cherished memories through specially designed respite vacations.
  • Respite Hospice in the Caribbean: Establish a dedicated hospice facility in the Caribbean that provides comprehensive care and relaxation for families, ensuring a serene environment for both patients and caregivers.

2. Support and Empower Families and Caregivers

  • Support Groups: Facilitate regular support group meetings to provide emotional and practical support for caregivers, patients, and families.
  • Educational Resources: Develop and distribute educational materials to help families and caregivers understand and manage the complexities of Atypical Parkinsonism.
  • Advocacy: Advocate for the needs and rights of those affected by Atypical Parkinsonism at both the local and national levels.

3. Advance Medical Understanding and Management

  • Collaborative Research: Partner with medical institutions and researchers to support studies aimed at understanding Atypical Parkinsonism and developing effective treatments.
  • Medical Insights and Training: Provide healthcare professionals with the latest insights and training on Atypical Parkinsonism to improve patient care.

4. Promote Awareness and Education

  • Public Awareness Campaigns: Conduct campaigns to raise public awareness about Atypical Parkinsonism and the challenges faced by those affected.
  • Educational Events: Host seminars, webinars, and workshops to educate the public, healthcare professionals, and policymakers about Atypical Parkinsonism.

5. Foster a Supportive Community

  • Online Community Platform: Create and maintain an online platform where individuals and families can share experiences, find support, and access resources.
  • Engage with Stakeholders: Build partnerships with organizations, companies, and individuals dedicated to supporting neurological disorders to enhance our outreach and impact.

6. Expand Global Reach

  • International Collaboration: Work with international partners to share knowledge, resources, and best practices in the care and management of Atypical Parkinsonism.
  • Resource Distribution: Ensure that educational and support materials are accessible to a global audience, reaching as many affected individuals and families as possible.

Commitment to Excellence

At the Coleen Cunningham Foundation, we are committed to excellence in all our endeavors. We pledge to uphold the highest standards of care, compassion, and professionalism in our services, ensuring that every individual and family we support receives the best possible assistance and guidance.

Together, we can navigate the challenges of Atypical Parkinsonism, creating a brighter future for those affected by this condition.

No One Walks Alone!

Laura Louizos
Executive Director
Coleen Cunningham Foundation for
PSP Awareness

Donate